Hi again everyone. When I was diagnosed with GCA and PMR in March I was put on 80mg of Pred which worked a treat and I lost weight!
I have been reducing with my GPs help and am at 18 mg which was a bumpy ride yet it was manageable. Now the aches and pains are back. Boo...... any advice?
In June Liz and I were in Cyprus and I came over all weird and thought it was GCA again so went to the local A and E where I was told to up the pred by 5mg which I did. I have to say the a and e in Limassol was awful. Even the toilets were worse than any I have been in.
Turns out I had diabetes t2 and no one told me. So here I am back to the aches, pains and fatigue wondering what to do next.
We’ve booked a cruise coming up in October and at least we will have British medical onboard and be in the Canary Islands area. Hope you guys are all wonderful
David
11 Replies
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Hi David
I was wondering how you were doing & here’s the update. Have you thought of going back to 20mg & sitting there for a month or so & see how it goes? As you’ve done so well to get from 80mg to 18mg maybe your body is just kicking back a bit!
Glad to hear you’ve booked a Cruise as you can chill out or do whatever you fancy & no stress 😎
See what some of our GCA Members think about increasing your dose a little bit.
When do you see your Rheumatologist or can you ring their Helpline after the Weekend?
Kind Regards
MrsN 🚢
• in reply to
Thank you Hidden I will do an econsult with my GP on Tuesday who will doubtless give me good advice and that will be to up the dose as you say you smart lady! I'm just concerned with the T2 Diabetes coming along too :/ Oh and high blood pressure.
Oh yes on the cruise I loved it last year and if I felt knackered could just fall asleep (in the shade) in a quiet area with no fluffy characters bouncing around
Dxxxx
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I’m off for a Five Day Cruise in October, l can’t tolerate the heat at the moment, so a cool Northern Europe suits me nicely!
Our Poopadoop is very good on Diabetic Diets so l’m sure she’ll be happy to help & l think the Pred contributes to the Blood Pressure, at least it did with me.
Hi David, hang in there. Cruising and living are the right things to do. When everything else feels insurmountable, at least you can escape to somewhere lovely. Good luck with your recovery. Happy travels.
Thanks for the update David. Shocking about Limassol. I hope your next trip is wonderful with no worrying events. It sounds like you are doing well, all things considered.
Shame isn't it? I really like the people in Limassol too. Hey ho who knows what Brexit will bring? We do have private bank insurance so it's just cruises now. D
I envy you soooo much!! Cruising was my 'thing' (we even had our own boat on the Norfolk Broads - not cruising as you know it of course). But river cruising in Europe was one of my joys.
Too old, too ill even to get to the boats these days. Still, lots of lovely memories.
Never been on a cruise but sounds just the right vacation for us folks with autoimmune diseases. Had PMR for 6 years when diagnosed with GCA. 20mg was a bit of a Wall for me to get below when I was tapering the higher GCA doses. Just couldn’t get below 20mg. So the advice to stay there a bit is good. Eventually after much researching and info gathering decided to try Actemra. At this point really glad I did. Am off Pred, tapering the Actemra (currently every 10 days from weekly and plan to go to every 2 weeks in October). Feel good with decent energy levels and no pain.
A cruise is superb. I didn’t think I would like it but have found it suits me. Smokers are practically unseen and have allocated areas away from the main areas so not even a waft... also our latest one is less in £s than a land based holiday. We use P and O.
I am not as achy today and not had a paracetamol or a sneaky tramadol left over from Cyprus cough cough mmm.
I haven’t heard of Actemra so thank you as I sail over to Dr Google
I went on a Danube cruise before I was diagnosed with PMR. I already had Fibromylagia and was struggling with increasing energy issues and the cruise was brilliant. I could relax on my bed and watch the scenery floating by at the same time. I found some of the guided tours a bit much - if we went again I'd look out for the hop-on hop-off buses that most cities seem to have which would make it easier to go at my own pace. At the time my husband was waiting for two new hips so I could walk faster than him, for once in my life, but he could walk further. He enjoyed it too and would consider another one so we may do the lower reaches of the Danube next year. I hadn't realised there was a canal between the Rhine and Danube so eventually hope to effectively travel the length from the North Sea to the Black Sea as perhaps the nearest I can get to a 'Grand Adventure' in my current state of health 😂😂😂
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I will do an econsult with my GP on Tuesday who will doubtless give me good advice and that will be to up the dose as you say you smart lady! I'm just concerned with the T2 Diabetes coming along too :/ Oh and high blood pressure. 
Feeling frustrated 
Bit of a ramble but this is the only place that I can .....
Visit to Rheumatologist 
Frustrated re Symptoms suggesting GCA
Advice required re tapering
